Marlieke van der Eerden, MSc and PhD candidate, is involved in the European FP7 research project ‘Best and promising practices in Integrated Palliative Care in Europe’ (InSup-C).

Marlieke van der Eerden

The decisive role of patients

Having worked within integrated palliative care research for some years, I have learned that patient-centred care is one of the key aims of integrated palliative care. Patient-centred care definitions focus on organising care around patients’ needs and involving patients as the ‘active collaboration’ partners of professionals in designing their treatment trajectory. This implies that patients have a decisive role in making their treatment successful and bear responsibility for this. However, in interviews with incurably ill patients and family carers in the Netherlands, which I conducted for InSup-C, I found that respondents were not always happy with the decisive roles professionals attributed to them. This often caused uncertainty with the consequence that patient-centred care was not achieved. Three examples from the data will demonstrate this.

Experiences of patients and family carers

I remember Alma, who had incurable lung cancer and had reached the point of deciding whether or not to continue life-prolonging chemotherapy. It was an extremely difficult decision. She had had negative experiences with a previous, similar therapy, but still hoped for life prolongation. Her oncologist had given her a lot of information about the benefits and burdens of this therapy and said that for more information she could consult Google. However, she didn’t like Google and she felt uncertain not knowing what to decide. She felt that her oncologist had abandoned her and let her down. She would have liked him to help her more in making her decision.

I also remember Peter. He seldom saw his general practitioner (GP) and he always needed to initiate contact himself when he had a problem. But he did not like this and would try to put off seeking contact for as long as possible. However, Peter now felt unsure whether it might be too late when he finally did seek contact with his GP. He would have preferred the GP to contact him more often.

Thirdly I remember Charles – in my view perhaps the perfect example of an active collaboration partner. He coordinated his wife’s care, was always very alert and took his wife’s blood test results and templates with him to all consultations in order to ensure the right treatment decisions. He really liked his oncologist, because he had once said: “We do it together.” However, when his oncologist asked whether he remembered the date they had started chemotherapy for his wife that really took the biscuit! He started to doubt who was actually responsible for his wife’s treatment.

Final consideration

These examples triggered me to question the decisive roles attributed to patients in patient-centred care definitions. They also prompted me to ask what patients and family carers themselves think about what their role should be in designing their treatment trajectory. This has inspired me to examine our data on this topic more in depth to find an answer to these questions. The forthcoming results will hopefully shed more light on this important topic.